Monthly Archives: December 2014

Merry Christmas

Hello. It’s me. You’d be forgiven for forgetting who on earth I am or what this little blog is all about.

There’s no point lying to you guys – you who know more about me than anyone else. The last few months have been pretty tough. I nearly lost my way. I’m not quite sure I’ve found my way back yet, if I’m honest, but I’m pretty sure I’m headed in the right direction now.

Christmas is a crazy fun and crazy busy time of year here. But it also gives time to reflect and breathe. There hasn’t been enough of that round here lately. Once again, I won’t tell lies. Each year that passes brings many regrets and multiple challenges and sadnesses. Milestones I hoped we’d nail by this Christmas but haven’t. Worries over education, walking and Boo’s clicking hips. But I am also immensely proud and pleased with all that he and we have achieved. More on those achievements too, I promise.

And there have been other reasons to celebrate too. This blog is one of them. I have blogged much less than I wanted to in the second half of the year. I just haven’t had the time or heart. I miss it enormously. But you have stuck with me and offered a virtual ear or shoulder and words of wisdom and encouragement when needed. This makes me more grateful than I can express.

Blogging has opened up my world to include an enormous number of incredibly lovely people. You know who you are. Thank you for helping ease me towards 2015 and all it will bring.

I hope you all have a completely fabulous Christmas and that I’ll see more of you in 2015!



Beating a Retreat

So, I have gone off the radar for a bit. Tried to get some headspace. Tried to work things out. I felt defeated. I couldn’t take the stress any more. It seemed like everything – NHS, Social Services and of course the blooming Local Authority – was trying to break us. They nearly did. Still might.

Nothing was going right. Too much was at stake. Everyone had an opinion on what we should do. No one could do anything, would take any action but me. Too much pressure. Too much at stake. Whatever I did, I realised would be wrong in someone’s eyes, including my own.

So, defeated I retreated. I took myself away from Twitter and the blog – my lifelines – and tried to ignore all the incursions on my sanity by pretending they weren’t happening.

The upshot? Well, nothing is resolved. All skirmishes are still active. But I have plans and options. I still don’t know how we will resolve things, but I have a clear sense that somehow we will. Few solutions are without cost, mostly financial but also emotional. This SEN world is an expensive one. But we have to settle things.

Boo deserves this. I deserve this. Sometimes you have to step away and admit defeat. Sometimes you have to realise that survival, rather than heroism, is the best that can be achieved. And we will.

Writing a Statement: An Open Letter to our Local Authority

Dear Local Authority

Thank you for issuing Boo’s final statement the day before your deadline. Thank you for taking an entire month to accept all but one of the tracked changes in the statement I wrote for him, in which I pointed out evidence you’d missed and solicited more where you felt it was needed. It only took you a second to click on that Word button that said ‘accept all changes’ and now Boo has a statement that has a wonderfully detailed and accurate assessment of his needs and matched provision in parts 2 and 3.

Thank you for letting me do your job for you. Oh no, no, no: don’t thank me. It was an honour. Honestly. And taking two and a half days off work to do this so that you didn’t have to, which I then had to make up at evenings and weekends, was a doddle. No worries.

My pleasure.

But why oh why did you miss out the most important sentence of all? The one that accumulated the several pages of 1:1 provision now rightly stipulated in part 3. Why did you not quantify the hours of 1:1 he needs each week in total? Is it because  you know this means you are committed to nothing at all? Is it because it renders the rest of the statement entirely meaningless?

A friend texted me to ask if you are very stupid or very strategic. I don’t know. I honestly don’t know.

So now we have to go to court to get them to ask you the same question. Well done, LA.  You stay classy.

I think it’s a brilliant idea, actually. Every time I don’t do my job at work properly why don’t I insist that my colleagues or other stakeholders take me to court to prove it? And then I needn’t face up to not doing something I am meant to do for five months at a time. Terrific idea. I will propose it at the next policy and planning meeting I attend.

But in all seriousness, because I, for one, have not forgotten what a serious matter this really is, I wonder if you would act differently if you knew the true cost of all this. No: not those beans you are counting, Madam, save them for the panto at the local rep. No: I mean the very real, the very painful, psychic costs of your incompetence? Of your failing in your duty of care to a vulnerable child. You may know this already, of course, or know and not care. But I’ll feel better if I tell you about this. So here goes.

This is how you make us feel.

You address us with the mock courtesy of a 1930s schoolmistress talking to the parents of a badly behaved schoolboy on a parents evening. The social niceties are there, but you aren’t very good at hiding the fact that you are talking down to us, as if we are badly behaved or stupid. Oh and while I’m at it, do get my title right, please LA officials. My daughter is the only Miss in my family and at 7 years old she will likely only put up with the diminutive for another couple of years herself.

You seek to infantilise us, feigning knowledge and regaling facts that are simply untrue. Do you think we won’t have done our homework? Do you think you can get away with it? Or have you been relating these spurious facts for so long that you now genuinely believe they are true? Who knows…

But you know, I’m 38 and big and ugly and all that. I can take condescension. I know what to do with it. Right back at ya!

So why do I finish each and every exchange with you wanting to sob my heart out? Why do I get off the phone shaking? Your incompetence? Your only partial truth telling?

No: it’s because you treat my boy, all our children, like a really nasty little problem. A deep inconvenience. A drain on resources. A  scrounger. Never mind that this little problem and all the other little problems like him mean you have a job. You treat each of our attempts at contact with you (and there have only been 4 in 7 months) as a minor outrage. How dare we try to speak to you. How dare we remind you that we are human.

And you have the audacity to sign off every email to us with a mission statement declaring the LA’s vision of creating ‘opportunities’ for young disabled people to ‘contribute and achieve more than they thought possible’. (Yes: you know which Local Authority you are, don’t you …?) Forgive me, but these words – because they are just words – stick in my throat.

Everything Boo has achieved to date has been in spite of you and we will continue to support him while you just put more and more impediments in the way. Frankly, you don’t know the meaning of the word vision or at least you’ve forgotten it as it’s gotten buried under a pile of budget sheets.

And you know, I get the financial stuff. I do. But you can’t even be honest about why you are failing our children. You don’t say: we can’t afford it. You say: we can’t do this because this form isn’t filled in to our satisfaction, or the OT didn’t use the right kind of headed note paper, or because he’s 2, or because you should give up work and live (euphemism alert) on carer’s allowance.

Local Authority, you leave us bereft, angry, embattled and sad. But worst of all, every day you drag your heels our son loses out. Some vision, Local Authority. Some vision.